Hope everyone had a great, pain-free weekend! I am feeling much better after Saturday’s perfect storm–coming down off of dex at the end of my four week Velcade cycle. I’m ready for a busy week, including a visit from my dear friends, Karl and Lorraine Vollstedt, from Hastings, Minnesota. Karl helped establish a very successful myeloma support group near the Twin Cities; the Stillwater group recently celebrated their 100th consecutive monthly meeting.
I chronicled the celebration in a post not long ago:
Speaking of dear friends, embattled myeloma survivor, John Knighten, emailed me last week with a medical update. If you recall, I introduced you to John in one of our first Patient Snapshot features last year.
John has had a rough time living with an especially aggressive form of high risk multiple myeloma. I met him at a support group in Spokane, Washington. His matter of fact attitude in the face of relapse and pending tandem auto/allo transplants inspired me. John has been kind enough to email me periodically so we can follow his progress. Here’s the latest:
It’s been another couple weeks since my last update. We’re on day 15 post transplant. Overall things are going great. We seemed to have engraftment around day 10-11. Counts have been coming up rapidly the last few days just about doubling every day. As a matter of fact, the transplant team has given me a couple days off; I no longer need daily labs and monitoring. Friday will be my next checkup with the team and just twice a week for the next stretch. This time around I’ve had quite a bit of mucositis compared to the first. I was on a study with amafostine my first transplant and had almost no mucositis. Pretty tough for a few days but you get through it–although it has been a struggle trying to get enough food down my throat to make the team nutritionist happy. The last week Shawna had a sinus infection and we sent her home for a visit with our girls. My brother Eric who’s an RN, jumped in and took over looking out for me.
My brother Paul also came over for a visit. We put word out to the Allo transplant team about finally getting the donor picked from the two matches, they came back during Paul’s visit that he would be my donor. Needless to say he has been bragging to the rest of the family that he has won the competition. We’ve been joking about what he’ll demand for his services my motorcycle or boat! We had a nice visit with Eric and Paul the rest of the weekend, although Eddie the clinic shuttle driver says he’s going to tell on us to Shawna. Paul was told to be ready to come back for the donor workup in early April and plan on staying at least two weeks.
Shawna got back feeling great and brought our 10 year old for an extended stay. Fred Hutchinson has a school dedicated to family and patients going through treatment that has really intrigued my daughter Kasey since my first transplant. So we agreed to have her stay and go to the Hutch School for a few weeks. She’s been having a tough time with Dad being away for treatment and was just all smiles since she’s arrived! The rest of the daughters will be here Thursday night for a long weekend visit. It will be nice to have all the kids here.
So it looks like we have made it through my second autologous transplant with no inpatient stay! The team says doing that once was a rarity and to pull it off twice really impressed them. I don’t see getting through an allogeneic without some impatient time, but I plan on giving it one heck of a try. Hope things are going well for you, take care- John
I love John’s competitive spirit! John breezes through transplants like most of us fight-off a cold. But dealing with painful sores in one’s mouth and throat is no picnic–trust me, I know!
I wanted to sneak-in a photo of a another Patient Snapshot star, 20+ year survivor Jim Bond:
Jim’s condition continues to improve following his allo transplant, using cells from an unrelated donor last year. He’s pictured above with his lovely wife and caregiver, Kathleen, in the couple’s kitchen in Ohio.
You look great, Jim!
Feel good and keep smiling! Pat